Sickle cell anemia patients in Kaduna State have complained of lack of drugs for their disease in public hospitals, and have appealed to Governor Nasir El-Rufai to intervene.
The patients said lack of drugs, especiallyPaludrine,was increasing their plight as they had to spend more on drugs outside public hospitals.
The Executive Director of the foundation, Andy Bako, said a key drug for sickle cell disease, Paludrine, was not always available in hospitals.
While appealing to the state government waivers onmedical bills for people living with sickle cell anemia as is being done for people living with HIV/AIDs, he stressed the need to encourage youths to go for genotype tests which should also be made free to enhance access.
“One of the ways the state government can help people living with sickle cell anemia is to empower them so that they can pay their medical bills. Apart from unavailability of Paludrine, the cost of laboratory investigations which include blood transfusion is also high. Another challenge we face on a daily basis is the discriminatory attitude of health workers towards us particularly on our clinic day (Thursdays) as they sometimes ignore us, shout at us or make derogatory comments about us,” he said.
A 24-year old sickle cell patient, HadizaSani Mohammed,pleaded with the government to improve facilities at the BarauDikko Hospital.
Responding, the state Commissioner for Women Affairs, HajiyaHafsat Baba, promised to work with the Commissioner for Health and Human Services on the possibility of demandinga specific budget for sickle cell anemia patients in the state.
She appealed to young persons to ensure that they know their genotype before getting married. This she said wouldprevent having children with the disease.
The Permanent Secretary in the state Ministry of Health and Human Services, MalamShehu M. Usman,however urged the Bako Youth Development Foundationto channel their complaints properly and advised them to visit the Drug Management Agency to lay their complaint.
“Since the complaint was laid to the women ministry, we will wait for the ministry to alert us on the issues because it takes joint effort of the ministries of health, women affairs and the hospital involved for action to be taken. BarauDikko is a teaching hospital, so we will see how to come in an advisory manner and for the issue of discriminatory treatment from health workers, the patients should take note of whoever maltreats them and report appropriately,” he said.
It is a group of disorders that cause red blood cells to become misshapen and break down.
It is the most common genetic disease in the world. Worldwide, 20 to 25 million have SCD with 12 to 15million in Sub-Saharan Africa. The World Health Organization (WHO) and United Nations (UN) designated SCD as a global public health problem as nearly 90% of the world’s SCD population lives in three countries including Nigeria, India and the Democratic Republic of Congo. Nigeria alone is estimated to have at least 150,000 newborns with SCD annually while the prevalence of sickle cell anemia is 2-3% of the population.With sickle cell disease, an inherited group of disorders, red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells (sickle cell anemia) and can block blood flow causing pain (sickle cell crisis).
Over 150,000 babies are born each year with sickle cell anemia in Nigeria.
People with sickle cell usually suffer severe pain.
Children with sickle cell can get stroke – which could be fatal and which could leave them paralysed for life.
People with sickle cell sometimes suffer a breakdown or degeneration of the hip joint/bones and end up unable to walk.
Persons with sickle cell tend to suffer extensive, chronic leg ulcers or sores that cause them much debilitation and social isolation.
Socially, they suffer stigma and discrimination.
Requires medical diagnosis
Infections, pain and fatigue are symptoms of sickle cell disease.
People may experience:
Pain areas: in the bones or joints
Pain types: can be sudden in the chest
Whole body: dizziness, fatigue, low oxygen in the body, or malaise
Also common: abnormal breakdown of red blood cells, delayed development, inability to make concentrated or dilute urine, inflamed fingers or toes, pallor, shortness of breath, or yellow skin and eyes
Consult a doctor for medical advice
Sources: College of Medicine, University of Ibadan and others.